Welcome back to my blog! Just some thoughts as I get on with life as I tackle Neuroendocrine cancer, and prepare for this year’s London Marathon. I’m establishing some solid habits in my training (mental and physical), and part of the mental side is to write.

It is only 58 days until the London Marathon, and the training is going well. It was a bit of a slow week, as my body was telling me to take a break for a little recovery. I’d been training pretty hard, and my body and mind were a bit tired.

To continue on with my “Desert Storm” experience 25 years ago, this blog covers the time of selection through our pre-deployment in Florida. It amazes me as I wrote this blog entry how much going to war parallels dealing with cancer. I wish I had written this story years ago, but I probably wouldn’t have been ready to see it really.

Here is the next part of the story.

Once selected for the deployment, it started a whirlwind of training, administrative tasks, and the hardest parts of notifications and then saying the good-byes.

The similarities of telling your loved ones are so similar between deployments and dealing with a serious disease. There are uncertainties and tears. It is pretty scary really. If I can take a moment to thank www.carepages.com. It was a tip from a friend, and it saved our sanity in the early days. Thankfully, I haven’t had to update it for quite a while, but it is comforting to know that things like this exist to help.

Ok, my “war” story’s next phase was the preparation.

Chemical warfare “gas mask” training is normally held over a couple days. A special training session was set up for me, and it only lasted 2 hours. They threw all the different scenarios and appropriate “MOP 1,2,3,4 levels” at me, and I can remember thinking, “Are they kidding me?”. I managed to remember: how you clear your mask, don’t use your gas mask bag as a pillow or the Atropine auto-injector pen would go off against my skull and kill me, and if you see someone rolling around on the ground you better put your mask on before you help them or the last words you may hear would be “thanks”.

They seemed to throw so much at me, but I think it was so much harder because of all the mental chatter I had rolling around in my head. I’ve had these feeling loads of times with different cancer treatments. I wish I had been prepared for this overwhelming rush of too much information. I think this could be a good example for anyone right after cancer diagnosis. The definitions of types of cancer, carcinoid syndrome, neuroendocrine, differentiated, well-differentiated, metastatic, the different “stages”, survival rates, progression free survival, clinical trials, chemo, treatment options, and the history and statistics hit like an information fire hose.

Weapons training went just as quick and pointless really. “Here is how you tear down, clean, and reassemble a M16, 9mm, grenade launcher” – over in about 30 minutes. I’d qualified as a “marksman” in basic training, and had my own guns. But looking back, I probably should have raised my hand with loads of questions. The range was closed, so no practice. I was kicking myself for letting this happen, and let this distract me from issues I could control.

On the cancer side; figuring out the documentation maze seemed overwhelming. Insurance paperwork, disability paperwork, social security, and how to find the right team and treatment were literally more stress than I’d ever known. For me, I know I’ve lost a lot more nights sleep worrying about paperwork than the actual disease. That’s just not right is it?

I’m starting to remember what a moron I was back then, and I sincerely hope this doesn’t offend any morons. I’m also getting a surprising feel on how close this experience was to my cancer journey. I’ve never really thought about it this deeply before, but looking back it is amazing to me how this experience prepared me for the biggest battle of my life.

I’d convinced myself that goodbyes weren’t going to be that hard. Nothing was going to happen to me. This was all being played out on CNN and Americans didn’t get hurt. I was so naive. I am finding though, this can be a good thing when you are dealing with cancer. I think it is very important to feel invincible.

Nothing really hit me until my parents pulled out of our driveway to head back to Iowa after a short visit, and that was tough. But, it was when I had to tell my pregnant wife and 10-month-old daughter good-bye as I walked through the gate at the airport that it really hit me. I really didn’t know when I would be back. It is kind of like the moment right before you go in for surgery, but there was no shot to knock you out.

It was dark as I walked off the plane in Tampa; I remember vividly how the warmth and humidity took my breath away. Coming from an Omaha winter I could instantly understand why people left the Midwest for the Florida.

I first met the team I would deploy with as I checked into the hotel. Captain Mark Meaders (USAF) was from the program office (Pentagon), Sergeant First Class (SFC) Gary B (US Army) from the Whitehouse Communications Agency, and Air Force Technical Sergeant (TSgt) Jerry Hibberd from Engineering and Installation and I (Staff Sergeant Z) would meet Senior Airman (SrA) Ryan Bradshaw from HQ TAC at Langley AFB later (that’s a separate story to be shared only in a bar over beers). We bonded quickly over a meal and a lot of drinks.

Capt Meaders was the expert with dealing with the program offices and CENTCOM leadership. SFC “B” was the expert in dealing with the factory engineers and had supported senior “National” leadership before (he was the Ace). TSgt Hibberd was an expert scrounger, and could get anything. SrA Bradshaw and me (SSgt “Z”) were the grunts, and we were labor and just knowledgeable enough do the day-to-day maintenance while not screwing anything up, and if this deployment went long haul we could be left to keep things running for at least six months.

I can pick out the same players and their roles several times over in all the different departments I deal with in several hospitals I’ve used. Finding the right team in dealing with cancer is crucial! You have to trust them. I’ve been fortunate to have some of the best in the world on my team. I only say “some of the best” to not offend any of the other cancer teams, but I really believe mine are the best. You have to believe!

We spent the next several days configuring the equipment borrowed from “Whitehouse Com”. We watched the news each night, and were updated by CENTCOM channels on the Air War, and later the ground war. It seemed to be a lot of information, and included a lot of speculation and waiting. Just like the “wait and see” game of blood tests, scan results, and the “what if” game of thinking of the scenarios. Waiting sucks!

While we waited, the air war had started and was a couple weeks in, and right before we left saw the start of ground operations. This was no bluffing game.

The last weekend before we left for came and we were ready. Our equipment was configured, bags were packed and all that was left was to wait a couple more days for our turn on the military transport schedule. I was allowed to go visit my Grandparents in Dade City, Florida just about 30 miles east. They were living in a mobile home park with several “snow bird” families from my hometown region in Iowa.

This generation came from a different era of war. My great uncle had been a prisoner of war in WWII, and was also at the park. Several of the men there had been to war. But, it wasn’t really talked about. It was the elephant in the park, and nobody really spoke of it. Ok, I’m getting a bit repetitive here, but this is just like the elephant called “cancer” that seems to be right over my left shoulder most of the time. The veterans in the park seemed to give me a little nod and a quiet word that seemed to say, “you’ll be alright”. Some didn’t say anything. I now understand that talking about elephants can be hard.

I’d never been to visit my grandparents in Florida before, but had heard so much about it that I felt like I had. It felt like Iowa in that little community. They even had a version of the Nashua Iowa’s “Little Brown Church” called the “Little White Church” of the South, and their reverend was a woman named Dr. Rose.

My grandpa was a pretty quiet man, but he really wanted me to meet Dr. Rose. I’d never seen him quite so animated at making something happen before. He had a tremendous amount of respect for her. I don’t consider myself a very religious man, but I do try to live to Christian values. I’ve never been a very big churchgoer, but there would be no point in trying to excuse myself this time; my grandpa was taking me to church that Sunday. Saying “no thanks” was not an option.

I was spending the church time quietly thinking about the deployment, and wasn’t really paying attention as Dr. Rose, the choir and congregation worked their way through the program. Then they went through their prayer list (it was about 30 minutes long), finishing with the servicemen in the “Persian Gulf”, and then I was called up in front of the congregation.

“WHOA! What? Why? No Thank You!” was on loop in my head. But, my grandpa smiled and pushed me up. I felt like a little boy. “Who was this man? There was no way he would have been pushed up there”.

Ok, I was obviously not in control, and there was no point in resisting. He was doing this on his own. Don’t make him have to get Grandma involved. I’d just go up front, and they would introduce me and then I would sit down right? I calmed myself and went up.

“Lord, please put a force field around this young man”, was the introduction from Dr. Rose. (My grandpa smiled even more!) “What? Oh my! Seriously? Was this some kind of cult? I’m not worthy of this!” was the new loop in my head.

This was one of the most surreal moments of my life. A “force field” sounded a lot more direct than any prayer request I’d ever heard. To say I was uncomfortable was a bit of an understatement. I’m uncomfortable typing this part of my story.

On the lighter side; I’m pretty sure this “force field” hasn’t hurt. For years I never seemed to get caught in the rain or a storm unless I spoke of the “force field”. Go ahead and snicker; but seriously….very rarely do I get caught in rain. It has happened too many times in the last 25 years for me to think it was just a coincidence. I’ve definitely enjoyed recalling the story quite a few times.

If there is one thing I can say in a positive light about cancer, it is that it has generated surreal events at a rate I could never have imagined. Prayer, meditation, positive attitude, “signs” and visualization are probably just as important as common sense, medicines, treatments, exercise and diet. Examples happen all the time. I’ve got loads of examples, and I’m struggling to narrow it down to a couple quick stories for this blog.

One example happened over Thanksgiving 2011. We were invited over to our friends for Thanksgiving dinner, and there would be several friends and a senior “healer” from their Church. It is a well-known church in the area, and a bit controversial and hard core Christian for both England’s conservative standards and mine.

I thought it was a bit weird that when I was introduced to anyone from their church that they would touch me while they talked to me. Either on the arm or shoulder or would hold my handshake for an extra few moments. It was weird but it wasn’t awkward.

I had just had a round of Y-90 targeted radiation therapy a couple of weeks before. I was safe to be around, but I was supposed to sleep on my own for another week or so to limit the exposure of radiation to my wife. Anyway, as I awoke alone in the morning it was really quiet when I felt like I was being touched with a warm washcloth on the back of my right shoulder.

I mentioned this to my friend (her name is “Faith” by the way – I know right?) over coffee a few days later, and she got very excited. She then explained to me that her friends were all trained healers, and they had laid their hands on me and prayed for me. She knew I would never have agreed to have a healing session. So, this was her plan. She you can imagine how she took my “washcloth” feeling as a sign it was working, and I can’t really argue with that! (BTW, I didn’t even know at the time that I had bone metastasis in my right scapula.)

More recently; I was on a training run along the river on Sunday, and I was thinking of all the friends I’ve lost to cancer. I was wondering if I could come up with a list of 26 to run a mile for during the marathon. (The number is pretty close). I was also trying to decide if my light-hearted blog version of my Desert Storm story was disrespectful to them and those servicemen who paid the highest sacrifice during Desert Storm and all the wars in the Middle East since. I sure hope it doesn’t disrespect them; they have my highest respect and gratitude.

I was also wondering what was the point of all the physical and mental training, the healthy diet, the treatments, and writing. These friends are no longer with us, and how would anyone ever know they had been here. I was getting a bit down really, and then I noticed ripples on the water from a breeze come directly toward me.

This breeze was a bit different. I was like a breath. That is when it hit me, and I realized their effects were just like the wind. We can’t see them, but we can see their effect in their families and friends left behind. I was reengaged!

As if this wasn’t surreal enough that I noticed something that may have been a message. Later that night (completely unexpected) I received two separate messages from daughters of two different friends of mine who have recently passed away. One thanking me for supporting her mother as she dealt with cancer, and the other asking for my advice on a topic she would normally have asked of her Dad who passed away a year ago.

A “force field” seems a bit dramatic of a name to call the summary of all this stuff? But, it is a pretty good title, and I’m pretty sure it is still there! At the very least, I know it is kind of cool to believe it is anyway. You have to believe in something!

Welcome to my blog! Just some thoughts as I get on with life as I tackle Neuroendocrine cancer, and prepare for this year’s London Marathon. I’m establishing some solid habits in my training (mental and physical), and part of the mental side is to write.

Here is a little recap about the physical training habits I am establishing. It is day 264 of my “182.5” mantra and only 85 days until the London Marathon. I’m currently taking a spin class on Mondays, rest day Tuesdays, circuit training for an hour on Wednesdays, 10km run on Thursdays, rest day Friday, 5km and weights on Saturdays, and a long run of 10 miles on Sundays. I’m finding the training hard, but tonight’s 10km run was the first time I have felt strong since the cold I caught over the holidays. My diet is working quite well too. I’m trying not to focus on weight loss, but to make healthy choices. I’m trying to eat for fuel.

This week includes a big milestone for me personally. This is the 25th anniversary of Desert Storm. 25 years? Really? It seems just like yesterday. My “war” story isn’t very action packed, but it was quite a big event for my family and me. I was lucky, only a couple months and no injuries or traumatic events. I cannot begin to believe I understand anything the servicemen and woman have gone through in WWII, Korea, Vietnam or in Iraq and Afghanistan, but can empathise with them over issues of separation from family, heading off into the unknown, and the unexpected feelings on returning home.

It is crazy how the mind catalogues events, and some events carry more impact than others. You know; big occasions when you are a child, high school, first times, wins, pain, joy, and sorrow. I’d like to add – saying goodbye to your family as you prepared to leave for war.

As I write this entry, my mind is flooded with both good and bad feelings. I can easily see how some veterans get stuck on the bad, and that can lead to very dark places. So, why do some veterans seem to be able to adjust to living with these experiences? My experiences seem to feel a lot like dealing with the traumatic experiences of dealing with cancer. Maybe I can use them to help myself through this battle, and that is exactly what I’m going to try.

I’m starting to feel another essay coming on. If you think you may need a break, you may want to go to the toilet now. This could be a while. In this blog I’m going to discuss how (25 years ago) I was selected to join a small team charged with taking a secure telephone switch to Riyadh, Saudi Arabia for General Schwarzkopf and his staff. Seems like yesterday.

From 1982 to 1991 my career in the United States Air Force was no script for an action movie. I was a Strategic Air Command (SAC) airman. Not even close to be involved in anything Tactical like Desert Storm. GThe first four years I was an administrative clerk in the Offutt Air Force Base education office. It is where I took night classes in electronics and finished my degree in 1986. From there I retrained (Keesler AFB, Mississippi) into the career field of electronic computer switching systems maintenance (early computer maintenance).

I was then reassigned from Keesler AFB, Mississippi back at Offutt Air Force Base, Nebraska to the HQ Strategic Air Command (SAC) underground command post. Over the next five years I worked on some really old gear (back to the Cuban Missile Crisis days of the early 60’s), and also on state of the art communications (for example, lasers and fiber-optics were new back then). The Cold War was still going on, and as the headquarters for America’s nuclear arsenal, we were at “Ground Zero”.

Even though I was “technically in the military”, it really didn’t feel like it. We didn’t bother with chemical warfare training, physical training, putting up tents, map reading, marching, etc. We were only going to be around 15 minutes into a nuclear war. What was the point? It was at this point in my life that I established some pretty unhealthy habits (smoking & chewing tobacco, skipping breakfast & lunch, drinking coffee and diet coke instead of water, binge drinking, not exercising, not effectively dealing with stress….wow, typing this list is quite depressing!)

However; if there was something broken, we worked our butts off until it was restored. This equipment was used to send out the nuclear alert messages. There was no messing about, people got hurt even on false messages. They could cause whole B52 bomber units to spin up. It was very serious! Some very challenging problems, and since it was a one of a kind facility we’d have nobody to call for support.

Our military exercises were short and sweet. They were held several times a day, and often I didn’t even know they were going on. All ending pretty much with us getting “smoked”. You’ve seen the movies when a missile office has to point a gun at their partner to turn the key, right? Well, I was one of the guys behind the gear that made sure they got that message. Most of the time I had a cigarette in my mouth (we could still smoke in the office then), a cup of coffee within reach, and a Snickers candy bar in my pocket.

My specialty (1989-1991) was on a new type of secure voice telephone switch. These switches allowed national leadership to pick up the phone and call & conference on encrypted lines (“specialty” was in my mind’s eye, because I’ve since realized I wasn’t even a novice compared to true specialists). It was a switch used by White House communications, the Pentagon, HQ SAC, HQ TAC, and US Central Command. At the time of Desert Shield & Storm, CENTCOM Forward (Riyadh, Saudi Arabia) was configured off “long local” telephones. These were over Satellite communications, and a lot had to be right for these phones to work (especially in encrypted mode).

My Desert Storm mission!

Not knowing how long the “Gulf War” would go on, this setup was too unreliable for critical communications to General Schwarzkopf and his staff with General Powell and other national leaders. The secure voice program office started looking for military guys that could deploy with a switch (which was a mini-computer with routing tables, digital and analog interfaces, and was capable of direct and conference calls). It was quite a “state of the art” piece of gear at the time.

At the time contractors maintained the CENTCOM switch, and at that time could not be forced into a war zone. This is where I came in. They would take one “active duty military” from HQ SAC, one from Whitehouse Communications, one from HQ TAC (Langley AFB, VA), an Engineering and Installation expert (E&I), and our leader would be from the program office at the Pentagon. I was selected from about half a dozen guys in my work center that all volunteered to go. In the military, most don’t want to be the guy left behind, and I definitely “wanted” to be in the game.

We would meet in Tampa, Florida to configure our equipment, get on a transport plane to Riyadh, set it up, and then kick back and watch it all run smoothly. Have you noticed there was no thought of how this would all end? I was so naive. (BTW, the contractors were really disappointed not to be going. They were just as dedicated to the mission as the military, and they still are. Contractors, National Guard, and Reservists have proven themselves vital over the years, and today more than ever!) In 1991 I didn’t feel this way…I was so ignorant!

This story is starting to get long, and I’ve already left out numerous points I could write a separate blog entry about.

I think this is a good place to take a break, and bring this story into parallel with my cancer and marathon journey.

I feel this point in my Desert Storm story lines up well with my cancer journey’s pre-diagnosis stage and on the marathon side it lines up with up to my selection to run for the NET patient foundation.

Some of you know over the last four or five years I have been spending a lot of time reading and studying the power of keeping a positive attitude. My goal was to understand myself a little better, and then maybe be able to use this knowledge to help others as well as “cure” myself. I’m a long way from being cured, but it has helped me establish a level of resilience I’ve never had before.

One of my favourite resources is Mark Manson.net, and in one of his earliest articles he shares a commencement speech of writer David Foster Wallace. He started off the speech with a short story. To quote: There are two young fish swimming along and they happen to meet an older fish swimming the other way, who nods at them and says “Morning, boys. How’s the water?” And the two you fish swim for a bit, and then eventually one of them looks over at the other and says “What the hell is water?”

It is pretty obvious to me now, that in 1991 I was one of the young fish. I was swimming in things bigger than I realized. What I was getting into was not as simple as I early laid out “meet in Tampa, Florida to configure our equipment, get on a transport plane to Riyadh, set it up, and then kick back and watch it all run smoothly”. It was much more complicated than that, and its the same with the battle against cancer. The stages for cancer for me are; before diagnosis, diagnosis, educating yourself, dealing with the disease, deciding on a treatment, going through the treatment, living with the disease, overcoming or succumbing to the disease, and life after the disease.

Up to this Desert Storm pre-deployment point, I had set up a point where I was definitely swimming in “water” I did not understand or appreciate. That’s not to say I had not envisioned it. When tensions mounted, and war was looming I had visualized all the pieces that would need to fall into place for me to be involved. I’m not saying I wished for it, but I do vividly remember visualizing. It is one of the few times I really remember visualizing to such detail. And, years later I often reflect back to this example of when visualization has worked.

In the early days of my cancer diagnosis (probably over the first couple years) I didn’t realize what “water” I was swimming in. I was ill for quite a while, but ignored to signs. Convincing myself the signs were just “getting older” and probably diet related. I would have used visualization then if I had understood the water.

Do I really know what swimming in “London Marathon” water is? Do I really know what running 26 miles is like? Do I know what a “wall” is? Do I know who and why I’m running? How can I handle this with honour? I can’t pretend to know I will be able to know for sure until I do the marathon, but I’m going to use the lessons learned from Desert Storm and cancer to get myself as prepared as I can envision. Including the eventual post marathon.

If you look at the speech by David Wallace I hadn’t learned how to think, but was definitely the “center of my own universe”. I had learned how to troubleshoot computers and work hard, but I was clueless on how to take myself back and really look at the big picture of what was going on. The mission I was going to support was setting a world stage we are still dealing with today.

But to me, I was doing something big in my career. When I am in this mode I’m quite good at putting blinkers on, and pushing off all other responsibilities. It can actually be a place you can hide from other responsibilities that don’t go away. Things like taking care of my wife, daughter, unborn daughter, home, and my family’s needs. These still need to be dealt with. Oh my, I’ve just realized I better re-evaluate my marathon and cancer journey. (Note to self & point taken!)

My “war” experience could not have gone any easier really. I can only imagine the effects on some of the same type of men that have been deployed over and over again into Iraq and Afghanistan. I continue to be amazed and inspired by the resilience of these young military men and women and their families. Just as I continue to be amazed by others affected by cancer and their families.

The military and patients aren’t really that different. Those that seem to handle things the best have set up habits that establish resilience. Exercise, diet, meditation or reflection, planning, education, and keeping things organized. Simply establishing good habits.

My habits of exercising, diet, meditating/reflection, and staying on top of my appointments and paperwork are paying off for me over the past 263 days. (I’m 8 years into my cancer journey, in control of the disease, and I’m training for the London Marathon). I’m also feeling pretty good about things!

Over the next few days and weeks, I’m going to continue this story through the post-deployment period. I’ll talk about the shocks of: chemical warfare & weapons training, Florida, CENTCOM, flying on military transport, Saudi Arabia, the awe of heroes, food poisoning, and a couple stories about returning home.

If you’d like help setting up your own mantra, I’m happy to help – just drop me a line at zwanny@hotmail.com. If you’d like help with dealing with NET cancer, please contact the NET Patient Foundation, which exists to help NET patients, their families, and carers.

It has been quite a while since I’ve updated on my “182.5” mantra. But, that does not mean that I haven’t been living it.

I am now on day 246. Yep, I smashed the 182.5 days and I’m well into my second set. I didn’t get down to 182.5 pounds, but I did meet some other big aims. 18.25% body fat according to the USAF online measurement calculator. Also met my 83KG bench press and 182.5 seconds plank.

I’ve been continuing to work on my visualization as well, and pulled off a big one with a place in the 2016 London Marathon. And, I’ll be running for the NET Patient Foundation.

On the “Virgin Money” website you can submit “your story” of why you are running. Below is a copy of the 14,400 character essay I wrote for this website. I’m quite proud of it actually, and hope you enjoy reading my marathon story up to now.

The 14,400 character version of “My Story”

Thank you for stopping by my donation page. I’m running the London Marathon 2016 in support of the NET Patient Foundation to raise funds and awareness for the disease I’ve been dealing with since diagnosis in 2007.

Neuroendocrine Tumours (NETs) are abnormal growths that arise from cells of the endocrinal (hormonal) and nervous systems. NETs can be cancerous (malignant) or non-cancerous (benign). Neuroendocrine tumours can occur throughout the body, but primary sites include the gastrointestinal tract, pancreas, rectum, lungs, and appendix.

The NET Patient Foundation was founded in 2006 to provide support, education and information to anyone affected by neuroendocrine cancers. They are advocates for the patients so they may achieve the best possible outcomes. They raise awareness of NET cancers throughout the UK. Lastly, they raise funds for clinical and translational research projects.

My story is very similar to many patients of Neuroendocrine Tumour cancer (NET cancer). It started with being ill with “carcinoid syndrome” for a few years with night sweats, diarrhoea, tiredness, unexplained rashes, and just overall feeling run down. I had convinced myself it was all down to a very unhealthy lifestyle and diet.

By the time I raised my hand with a problem, the diagnosis was confirmed after cancer metastases to the liver. (If you can get it before the cancer spreads, you can remove the primary tumour and you are “cured”. If not, it becomes a case of managing the disease, with a survival rate around 50% at 5 years back then. This is why it is so vital to raise awareness. The NET cancer motto is “you can’t detect it if you don’t suspect it”. My cancer was diagnosed quite quickly, but the symptoms can other diseases like IBS, Chrons, coeliac, and even other cancers which leads to misdiagnosis in 61% of patients).

The plan was for a major liver resection (70%) and monthly shots of Octreotide (a hormone that controls the carcinoid syndrome). The surgery in January 2008 was hard, but it worked! The reduced tumour load and Octreotide held me well for about three years.

In 2011 we discovered the tumours were on a growth spurt. But this time, they were “inoperable”. What? They didn’t know my surgeon. My surgeon (Mr. David Lloyd at the Royal Infirmary Leicester) is superman to me! He had even developed a “microwave on a stick”, and had zapped some tumours while repairing a hernia in 2009.

I’d been dealing with the disease for three years, but was still relatively ignorant on what I was dealing with. Unfortunately, superman confirmed the diagnosis that it was “inoperable, and had likely spread outside the liver”. Things were starting to get a bit scary. More than 70%? How much do you need?

I was referred on my private insurance to Professor Martyn Caplin and the NET specialist team at the Royal Free in Hempstead – London. My oncologist’s (Dr. Karen McAdam) hands were tied with treatment options because NET cancer is not a good candidate for normal chemotherapy. NET cancer tumours are slow growing, which is kind of good news. However, the bad news is they are too slow for chemotherapy, which goes after fast growing cells.

After not hearing anything for a couple months I started to get impatient, and started looking for treatment options back in the USA. I went to the University of Iowa, to see Dr. Tom O’Dorisio who heads their NET Team with his wife Dr. Sue O’Dorisio. He explained my options to me, and in the end laid it out, “you need to get back to England and the “wizard” Professor Caplin’s team. The treatment you need is PRRT Y-90, and it isn’t available in America for NET cancer.” PRRT is Peptide Receptor Radionuclide targeted therapy. It is the Octreotide hormone with an Yttrium nuclear bomb on its back, taking the radiation right to the tumours. Luck would be on my side, because Dr. “O’do” was meeting Prof Caplin soon after my appointment in Portugal and he said he would mention me.

I was contacted by the NET team with an appointment to meet with Professor Caplin soon after my return to England where I have lived as a member of the US Department of Defense since assignment in 1998. Please note: A large part of the “delay” I perceived was surely down to the unbelievable growth of the NET team’s patient load. Prof Caplin stood up the team in 1996 with a couple dozen patients. In 2011, the patient load was close to 1500. With better awareness and standardized classification of cancer, more people are now diagnosed with NET cancer than stomach or pancreatic. Across the UK, The NET Patient Foundation keeps this population informed on treatment, diet, and research.

The plan was to get a Gallium-68 scan, which is a radioactive labelled Octreotide that highlights the locations of the tumours, but more importantly shows how receptive the tumours will be to PRRT. At this time, Ga-68 hadn’t even started clinical trials in America (it did get approval in 2015). I was very fortunate to be getting this scan at the University of Central London (UCL).

The scan confirmed the cancer had spread outside the liver (throughout the abdomen, lymph nodes, jaw, back, shoulder, lung…quite scare now!), but it also confirmed my cancer was likely to be very receptive to the Y90 treatment.

Over the next several months I would go in for three rounds of Y90, which consisted of an intravenous injection of the Y90 Octreotate that lasted about 20 minutes, and then 24 hours of isolation in a lead-lined room. It was surprisingly easy, even dealing with the radiation sickness after the procedures. The biggest issue for me was tiredness.

In 2012 the tiredness became too much to continue working. I was struggling to do even basic tasks, and no ability to concentrate. I took a big step, and “punched out” of work. After over 30 years serving the USA Department of Defence, it was time to turn in the ID card and walk away. This was a pretty low time for me. I was thinking, “at least I’ve made it until the kids are out of school. They are self-sufficient now”. It was pretty dark.

Several months later I was also diagnosed with diabetes. “Really”? Well, I can do something about that right? So, I decided I would try to control the diabetes with diet and exercise. I might be the only person I know who was excited to be diagnosed with diabetes. So I started running, and amazingly I got in control of the blood sugar levels and started to feel much better! So, I kept on running. Running my first 10Km in London for the NET patient foundation in 2014.

I was monitored every six months via CT & MRI scans, and was feeling much better than the medical reports indicated I should. During one scan session (they last a couple hours, so plenty of time to do some real thinking) I formulated a plan to form a weekday supper club band with a couple of friends I knew. We do anything from Paul Simon’s “Boxer” to Guns and Roses’ “Sweet Child of Mine”. The therapy of this music has been unreal. I never feel bad when playing with the band. We’ve had some really fun gigs! Most seats are filled during dinnertime gigs, and we have played some fundraising concerts for NET Cancer Day and Cancer Research UK. The quality of life PRRT has afforded me is incredible!

I was then still feeling good until scans in January 2015 showed the cancer was growing again. Another Ga-68 scan confirmed it was time for the next session of PRRT. This time we would use Lu177, as it was showing better results than Y90. It was laid out as a four rounds of treatment very similar to Y90. My first round was in February 2015, second was in May, third in August, and the fourth & final would be sometime early December.

In May, I decided to really get serious about getting well. What did I have to lose? I was running out of treatment options. This may be the last PRRT I could get? Your body can only handle so much radiation before your bone marrow fails.

(BTW, my nephew’s college baseball team “Coe” in Cedar Rapids, Iowa was tearing it up in the post-season at this same time. It made my recovery from that round much easier to get through)

I had been doing loads of reading. Including the book “Getting Well Again” by Dr. Carl Symington from back in the 1980’s. Diet, exercise, meditation & visualization had shown amazing results in their cancer patients. Even though this data was over 30 years old, it all made sense from a troubleshooting standpoint. I had also completed an on-line course on “life coaching”, with the hope to do some “cancer coaching” for people just like me that needed help dealing with cancer. I was understanding my mind, attitude and body better than I ever have.

In July 2015 I ran my 2nd London Great British 10Km for the NET Patient foundation with my wife Lesley. She has been there since the start! An unbelievable rock of support! What a great day! I was feeling really good!

The July 10Km was also close to the midpoint scans to check on how well the Lu177 treatments were working. They were working really well. Well enough that we started planning to hold the fourth treatment back. The mantra I was now living by was working. It sure wasn’t hurting.

So, I kept on running. Signing up for a half marathon in Amsterdam that October. I ran it with my sister. BTW; my sister was diagnosed with NET cancer after getting checked out after my diagnosis. Through the Royal Free NET team and NET Research Foundation (called “Caring for Carcinoid” at the time), she was put in touch with Dr. Matt Kulke in Boston, MA. Her cancer was found before metastases, and after removing the primary she was “cured”. Awareness works!

Shortly after the Amsterdam half marathon, my sister found out she had a place in the 2016 London marathon with a charity she works closely with. I started to think at that time, “If the NET patient foundation ever gets a place I am going to put my name forward to show what an impact PRRT has had on my quality of life, and I am going to run it with her”. It could happen right?

This summer has been an important time for PRRT. It was removed from the NHS Cancer Drug Funded list (CDF) in September due to its high cost, data on Progression Free Survival, and impact on Quality of Life. Not necessarily a permanent decision, but the timing sure wasn’t good as this decision was made at the same time clinical trials were starting in America. It only makes sense that private insurance companies could balk at paying for treatment not approved by the NHS in the UK or FDA in the USA. I also have friends who are getting the same outstanding treatment on the NHS as I am with both my corporate and retired military private insurance. The NHS does an awesome job, but this was not good news for them!

I can see the CDF’s rationale; PRRT is expensive at around £67,000 a set. In my opinion there were two matters not really considered as part of their criteria. First, is progression free survival (PFS) must surely also be affected by the overall fitness (mental and physical) of the patient, and I have been proving this to myself for the past couple years. But it is the 2nd matter that could be the biggest game changer NET cancer patients have ever had. That matter is Immunotherapy, and it is showing tremendous potential with not only managing NET cancer, but also it is bringing the “C” word into the picture. The “C” word being CURE!

I’ve never really accepted “incurable” as an option. But now, I’ve heard doctors in our community start to whisper (look at minute 15) this “C word”. This means PRRT is no longer just an expensive palliative care option. It is the only option for some of us to get to the not too distant future only a few years from now where immunotherapy will be ready for prime time. The hope this instils is epic!

In November the NET Patient Foundation newsletter came out, and I saw the notice about the spot in the London Marathon. I put my name forward. I knew there were loads of supporters of our cause that would love to run the marathon. Some of the doctors and research scientists in our community not only work tirelessly for a cure, but they somehow find time and energy to do amazing challenges like swimming the channel to raise money for research. I would have been totally cool with supporting them if they were selected.

In early December I met with Professor Caplin to decide on the 4th round. In his opinion, “it wasn’t needed”. The MRI & CT scans showed we were back in control of the disease. He seemed impressed I had run a half marathon in October, and I should “continue to do whatever it is I was doing”. As he was looking ahead to when we would meet again I started to guess he was going to pick sometime around the end of April or beginning of May, which would be right after the London Marathon. And he did, so I informed him of me putting my name forward.

December was also looking much better, as our first family wedding was on the 19th and our entire family would be here for the event and for the Holidays! Have I mentioned “quality of life”?

On the way home I sent an email off to Catherine Bouvier (CEO of the NET Patient Foundation) to see if they had selected anyone. She informed me, “the board of directors had selected me on the PRRT angle, and she had just emailed me to see if I was I still interested? This was a big deal for the charity as it was their first and only spot after applying for 6 years”.

I’m absolutely ready to give it my all, and I’m all signed up!

I am very thankful for to have been given this opportunity to represent our cause, and I’m thankful for the tremendous team of nurses, doctors, researchers, charity organizers, and my family that look after me.

So there you go! That’s my NET cancer story. I’ll be ready! I can’t wait!

Thank you for your support!

Cheers,

Mark Zwanziger

Mark.zwanziger@sky.com

Through Virgin Money Giving, you can sponsor me and donations will be quickly processed and passed to charities. Virgin Money Giving is a not for profit organisation and will claim gift aid on a charity’s behalf where the donor is eligible for this. I really appreciate all your support and thank you for any donations.

“I know fear is an obstacle for some people, but to me it’s an illusion. Any fear is an illusion. You think something is standing in your way, but nothing is there – only an opportunity to do your best and gain some success.” – Michael Jordan This inspirational Michael Jordan quotes on fear is…

What is “it”? This is a pretty deep topic, but how can you live without thinking about “it”.

I think if you really want to tap into your power you need admit there are things out there you can’t explain. But that doesn’t mean they don’t exist.

I like to ponder on a fable of a devout Christian that was killed during hurricane Katrina. He had chances….to survive….to live.

The fable goes something like this…

Two weeks before Katrina, the weatherman forecast “the hurricane was entering the Gulf of Mexico, and could be huge. Better get ready”. The man said, “I’ll be ok, the Lord & Jesus are looking out for me, they’ll save me”.

A week before Katrina, the National Hurricane center had started tracking and modeling a path for Katrina and sent out more warnings. The man said, “I’ll be ok, the Lord & Jesus are looking out for me, they’ll save me”.

Then, the TV news reported where Katrina would hit, and police were advising evacuation. The man said, “I’ll be ok, the Lord & Jesus are looking out for me, they’ll save me”.

Then it hit, the fire and rescue were sent around to collect anyone left. He refused help. The man said, “I’ll be ok, the Lord & Jesus are looking out for me, they’ll save me”.

Then, the flood waters came. From his roof, the National Guard came to his rescue, and he refused help. The man said, “I’ll be ok, the Lord & Jesus are looking out for me, they’ll save me”.

Well, the floods swept him away and he was killed. He awoke and found himself at the “pearly gates”.

When he met Jesus; he asked, “what happened? I thought you would protect me”.

Jesus said, “what do you call the weathermen, National Hurricane Center, police, firemen, and National Guard?”.

What if this cancer journey is the same for me? Just a more desperate warning to get “it” together?

As I lived without consequence, I’ve been given opportunities to save myself. Addicted to nicotine, binge drinking, not a good diet, not very much exercise, and not a very good husband, friend or father really. Just thought if I worked hard at work, the rest would all sort itself out. I was right…”it” has sorted itself all out.

Mark, you have Glaucoma (2005)

Mark, you have an Acoustic Neuroma (2006)

Mark, you have Carcinoid with Liver Metasis (2007)

Mark, your tumors are inoperable (2011)

Mark, you have diabetes (2012)

Mark, they are growing again with some bone lesions (2015)

What have I been sent?

One of the best eye surgeons in the world, a brain surgeon and gamma knife surgery for the Acoustic Neuroma, a surgeon who had the balls to take on my liver surgery, the same surgeon who invented “microwave on a stick” to zap some liver tumors while repairing a large hernia, an oncologist who was had the wisdom of NET cancer to refer me to a specialist team, a Univ of Iowa NET specialist who introduced me to the “wizzard” and his team at the Royal Free in London for PRRT Y-90 & Lu-177. Not to forget, the nurses and Dr’s who manage my lanreotide treatments, diabetes, and general health. And, my friends, family and wonderful wife!

I don’t know if it is a god or the universe or my own spirit, but I do know I am a lucky boy.

I feel enlightened enough to recognize help, and to embrace it. To recognize where I am, and what I need to do. Because, I’m running out of available treatments.

If I want to beat this cancer, I need to make it until a cure is invented. To do that, I need to get my body and mind in their best possible shape to keep the cancer at bay long enough for the cure. And, to “visualize” it all happening.

I am seeing the signs…just a couple weeks ago, the major carcinoid group in the USA “Caring for Carcinoid” sent $100K to the team I see at the Royal Free to look into “immunetherapy”. Coincidence? I think not!

I’ve also been exposed to some great blogs, books, videos, and even a Silva “mind control” seminar.

I still don’t know if it is the universe or a god or both, but does it matter? I do know there are things out there that are pretty powerful! I’m a lucky boy to “get it” to that point!

Well, yesterday was a good day! Had the park to myself in the morning, and Django was able to swim a lot! Which, is great for training a 1 year old Golden Labrador.

Above is the worst pic ever taken of this handsome dog in mid shake.

Here is a better picture of the two posers I hang with.

After the dog walk I went on a training run for the Great British 10K 12 July.
Part of my 182.5 mantra goals is to run the 10K with 3K splits of 18.25 mins through the whole thing. (6min 6sec/Km).

Yesterday, I made the goal for Km’s 2,3,4 out of a 10Km run in 18min 18 secs. First time I’ve done it. I felt strong on the run too!

In the afternoon, I set off on the 3 hr trek to the Royal Free at Hempstead London. (Ok, I’d never noticed it takes about 182.5 mins to get there.)

Note: yesterday I was armed with a great quote from Marc and Angel Hack Life. “Pain is inevitable, suffering is optional”. How brilliant is this quote? I’d already used it about a 100 times on the run.

I prefer to drive to Edgware, and tube into Hempsted. Then, if I’m early enough I like to stroll down Hempsteda High Street.

I was so early to Edgware I decided to have my car cleaned. Where I had a real nice chat with the Albanian boss. He was very cool! We talked about the UK (he’s lived here 14 years, and was swore in as a UK citizen a few years ago by Boris Johnson). He loves Cameron, because he is clamping down on free benefits. He loves Bill Clinton, because of how he handled the Serbs in Kosovo (he wants a statue). He talked about his memories as a 13 year old when it all kicked off, and how brutal it all was. He hates Yugoslavia! He likes boxing, but does know a bit about freestyle wrestling.

I was fascinated by this guy! On a humanity scale, this man was up there! Simple, hard working, family man, and seemed content. Thanks universe or whoever organized this meeting!

After about an hour I made my way to the Royal Free. Passing my favorite shop window in London.

I arrived at thd Royal Free with 35 mins to spare. …….. “Sorry sir, your appoint is at the Wellington (swiss cottage area)” (No worries, this must be the pain from the quote of the day.)

So I made my way to the taxi stand. 5 taxis there. 4 empty and 1 guy mudering a bucket of KFC. “Sorry mate, I’m having me dinnah” (pain? I’m still not buying… “Cheers mate”, was all I said.)

I flagged down another taxi, and still made it to the Wellington with 10 mins to spare. (I’d like to point out this Hospital is so POSH it has valet parking. And, only takes about 15 mins longer to get to as Edgware…pain? Nope! I wouldn’t have had the chat with my new Albanian friend.)

I checked in, and also inquired about a bill I was sent. “Sorry sir, the scans you had last week weren’t part of the Authorization Letter, £3300 please”. (Painful yet? You bastard universe! But, I’m still not chosing to suffer-I’ll claim it myself.)

Made it to the appoint bang on time. “Sorry sir, Prof is running a bit late”. (Pain? Nope, I know how in demand this man is, and in cancer appontments you have to assume some appointments are the first. These have no time constraints.)

It turns out he wasn’t that late (30 mins).

The news was good! Scans showed stable tumors. “Might only do 3 rounds of Lu-177 instead of 4. Taking a long term approach to limit the radiation for a couple years. And, there is possibly a better isotope coming in a couple years”. (Inside my head voice, “2 more years…guaranteed”)

He examined me and said “whatever you are doing….keep doing it”.

“Great” I said aloud “Thank you!. “182.5…positive visualization”, I said under my breath.

It was a really good appointment. We talked about purines & uric acid, vit D, angiogenesis, immunetherapy, Israel NETs, Great British 10K.

Next round of Lu-177, exactly the date I hoped for in August!

Cheers universe!

Respect,
Mark

P.S. On the way back to my car I really wanted to avoid the tube going through Kings Cross at 6pm. So, I took a black cab taxi to “Edgware”. But, the driver took me to “Edgware Road”. (Piss off universe, you and some black cab drivers are assholes! I’m not suffering!) So, I smiled at everyone on my way through Kings Cross…sorry if that creeped anyone out!